posted
My fil is slowly going blind. He has many other symptoms as well, but is really seeking an answer for his eyes. He has had multiple surgeries/laser treatments and the Dr. still can't figure out why sometims he can see and sometimes not.
So, as a last resort he had a WB from Igenex. The only one that showed positive was 41 on both the IGG and IGM. Possible Lyme?
I know there are many posts here on reading the tests, but I don't have hours to search through the hundreds of posts. Can someone give me a quick answer?
I am seeing my LLMD tomorrow and will ask him to take a look - of course he'll probably want to see him too.
-------------------- "Few of us can do great things, but all of us can do small things with great love". Mother Theresa
posted
In my opinion, based on scientific literature, band 41 is not diagnostic of lyme and really has very little meaning. As you probably already know, this band can cross-react with many, many things....both infectious and non-infectious agents and is found in many healthy individuals.
However, band 41 is usually one of the first antibody bands to present when someone is infected with lyme and 'linked' to the Bb's flagella.
So, being that the diagnostic testing is so poor, it certainly doesn't mean that he doesn't have lyme, it just means that band 41 does not indicate alone, that he has lyme....particularly if he has been having symptoms for awhile.
This will have to be a clinical diagnosis by his LLMD....
Others on here will likely disagree with me. However, most LLMDs would agree that band 41 alone is not diagnostic of lyme.
I'm sorry for what your FIL is going through and I hope he finds the appropriate answer/treatment soon.
Posts: 561 | From mass | Registered: Jul 2007
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disturbedme
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posted
Considering that even just symptoms of lyme alone can be diagnostic, I think if he has many symptoms of lyme plus band 41, I think it means something definitely.
My husband and myself have only showed 41 positive, but both have low CD57s.
I've been sick for almost two years and have gotten better since abx treatment. I had sooooo many symptoms, but all I've ever had positive on both IgeneX WB and Lab Corp WB is 41 positive. Though later I did have a Bartonella positive. Since lyme and co-infection treatment has had an effect on me, herxes and then also getting better slowly, it definitely is diagnostic of lyme and co's.
Have you gone through all the symptoms with him, marked off what he has, and seen how many symptoms of lyme/co's he has? That's a good way to see how many symptoms he has and gives you a clearer picture.
The only thing you can do is take him to a LLMD and see what s/he thinks.
By the way, I think band 41 means more for lyme than most people give it credit for.
-------------------- One can never consent to creep when one feels an impulse to soar. ~ Helen Keller
My Lyme Story Posts: 2965 | From Land of Confusion (bitten in KS, moved to PA, now living in MD) | Registered: Jun 2007
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timaca
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posted
Band 41 is a common finding...most of the normal population will test positive to this band.
It does not appear that your father in law has been exposed to the lyme bacteria....meaning that lyme is not the likely cause of his problems.
Best, Timaca
Posts: 2872 | From above 7,000 ft in a pine forest | Registered: Feb 2005
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disturbedme
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posted
Timaca, just because his WB is negative does not mean he has not been exposed to Bb.
I've always tested negative and unfortunately, that means NOTHING.
And by "normal" population, how do you know these people aren't infected? Many people can walk around with lyme for years before knowing they actually have it. And, unfortunately, I am starting to believe most people really do have it unknowingly. It's an endemic. Plus, I am curious as to where you got this information about most of the "normal" population coming up positive for band 41.
-------------------- One can never consent to creep when one feels an impulse to soar. ~ Helen Keller
My Lyme Story Posts: 2965 | From Land of Confusion (bitten in KS, moved to PA, now living in MD) | Registered: Jun 2007
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disturbedme
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posted
hurtingramma -
I'd be very interested to see his list of symptoms. I think the list of symptoms will tell you the most, no matter his age.
-------------------- One can never consent to creep when one feels an impulse to soar. ~ Helen Keller
My Lyme Story Posts: 2965 | From Land of Confusion (bitten in KS, moved to PA, now living in MD) | Registered: Jun 2007
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posted
He has certainly been exposed - he hangs out at the same hunting camp as my husband and spends a lot of time in the woods. My husband went for years undiagnosed, as did I.
His symtoms are many, including insomnia, joint pain, he had a hip replacement, heart problems, joint swelling, light sensitivity (connected to his eye problems), along with other stuff that I can't name right now because I don't have his list in front of me.
-------------------- "Few of us can do great things, but all of us can do small things with great love". Mother Theresa
posted
Uless you stay indoors your whole life and don't have pets, or let ppl in to visit you, then anyone can run the risk of contracting Lyme Diesease.
It can be transfered to you via a host animal or person and you would not even know it.
Most ppl who are infected, never even see a tick on them.
Many do not get the rash.
We must remember that Lyme is a clinical dx and the tests are there to help the doctor make a dx.
Many ppl show negative on many or even all bands when they are tested. Especially if their body has been fighting the infection for a while.
Some ppl who test negative will go on to test postive after taking abx for a while.
I would have a good LLMD look at your FIL to help make that dx, especially if he is loosing his vision. This is not something to mess around with.
By the way, all the symptoms you listed are consistent with Lyme. Perhaps it's something else, but I think you are doing the right thing, by getting a LLMD invloved.
Best of luck,
-------------------- aka: Lyme Warrior
In order to do "real" science, you have to have a "real" conversation with nature.
Well Behaved Women Rarely Make History!
"Just Demand your Rights" Posts: 869 | From nor - cal | Registered: Apr 2008
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posted
Just remember, his immune system is probably too DOWN to register a healthy immune response. He's likely had this a long time.
Sometimes the sickest people are those who have very few bands show up. Again, it's because of the weak immune response.
This was posted by "Aligondo Bruce" on Band 41:
VITAL INFORMATION ON BAND 41!!!!
"The number of people exposed is in the millions. the reason you can't get treated is they have decided that only early disease merits diagnosis and treatment. The bacterium itself is the most bizarre human bacterial pathogen known, and is poorly understood. They don't know how many people are carrying a permanent relapsing brain infection. you can't get diagnosis or treatment because they have to pretend it doesn't exist and use labels like 'post lyme' and 'CFS' etc. for those who manifest illness.
Look at what steere did in his 1992 study which is the foundation for the CDC serodiagnostic standard. He and others often look back on this and refer to a 'normal' control, but in fact the control was taken from sick people...MS sufferers, CFS sufferers, in sum, conditions which could have been caused or complicated by late Bb infection. Moreover, he threw in 25 syphilitic patients which constituted 20% of the control. Hoever, syphilis itself has an annual US incidence of 3 per 100,000.
this statistical chicanery, which fudged the result at 41 kDa on Bb blot by many multiples, is significant, because syph serum will cross react at 41 kDa to Bb western blots. it allowed them to 'swift boat' the importance of the reaction to 41 kDa, which is the earliest and most consistent human ab response to Bb infection, being present in all stages as opposed to the rest of the proteins which are variably expressed according to stage, tissue type, even temperature.
Flagellin {41kDa} is necessary for Bb to survive under all conditions, and is constantly expressed, including in late CNS infection. Yet they chose to swift-boat this response.
why? it's for political and economic reasons. telling the truth about diagnosis and treatment results in mass panic and probable economic collapse/political revolution. it's likely a bioweapon. north american disease is different from european disease...lack of CSF antibodies, for instance. a much larger range of serum resistance to host species in wild{allows Bb to infect a much wider range of species, important in disease spread and maintenance in wild}. the CDC has found that Bb 31 goes intracellular in CNS cells.
Telling the truth threatens the careers and livelihoods of the very individuals who control this issue and who have actively lied and deceived and otherwise operated a scientific propaganda campaign for the past 15+ years, profitting from the campaign as they went.
lyme disease, which in the US also perhaps includes other pathogens notably a bioweaponized bartonella, threatens the entire establishment. if late disease was rare, we'd be able to get treatment. unfortunately, the EIS/CDC,DOD totally screwed this up and tried to make money off of the disease, making profitability their first priority as opposed to protecting the health of americans.
think about this...allen steere wouldn't listen to polly murray in early 90's when she reported a big incidence of neuropsychiatric disease in lyme. She had to call fallon. Now, fallon has overwhelming evidence of a serious disabling relapsing brain condition which is not easily treated. Global hypoperfusion on spect/pet ain't normal folks. Don't you think the CDC etc. should be breaking their balls trying to figure it out? Instead, we see nothing at all, only continued attempts to deny illness and obstruct treatment.
Obviously, they know what is going on, and have determined that the best course is to do nothing, to cover up, knowing that in doing so, they are condemning large numbers of people to perpetual diagnostic and treatment hell.
Think about it. it's a horrific scandal and I'm not sure how much longer these *******s can keep control of it."
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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posted
We have scheduled an appointment for him. My LLMD said that even just Band 41 being positive, the chances that he has lyme or another TBD is 93%!!! I'm not sure where that statistic came from, but it is interesting notheless.
-------------------- "Few of us can do great things, but all of us can do small things with great love". Mother Theresa
disturbedme
Frequent Contributor (1K+ posts)
Member # 12346
posted
quote:Originally posted by hurtingramma: My LLMD said that even just Band 41 being positive, the chances that he has lyme or another TBD is 93%!!! I'm not sure where that statistic came from, but it is interesting notheless.
I agree, especially if one has many lyme and co-infection symptoms.
Glad to hear he has an appointment soon.
-------------------- One can never consent to creep when one feels an impulse to soar. ~ Helen Keller
My Lyme Story Posts: 2965 | From Land of Confusion (bitten in KS, moved to PA, now living in MD) | Registered: Jun 2007
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